How do you exercise will you can't

It has been 4 years since all this started and my physical health has gone down hill. I can’t walk very far at all. I had to walk about half a mile last week and I missed two days of work after it. Feet and knees hurt so bad I couldn’t go to work.

My stamina is gone. I walk much and I am breathless. How do I get any exercise to keep some stamina when I can’t even walk. I try and do anything and I can’t breathe and my hurt pounds. What do I do? I’m trying to keep working, but just walking takes everything out of me.

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Tamac, you just do what you can. I always wondered what the heck people meant by exercise, and realised only with hindsight that I was pushing myself way too hard. I too, would exercise to the point where I was nearly incapacitated for days after.

Also a lot of the more recent pain theory and evidence suggests that repetitively pushing through your pain threshold can actually re-inforce pain sensitisation. The recommendation from the pain course I went on is to exercise to 90% regularly (each day), and over time, the threshold should slowly get bigger.

It sounds to me though, that your inflammation is not under control, which makes it really hard to do that 90%, because from day to day it’s so variable.

Is there anything you can take off your plate? Cause it is really hard to do additional things like exercise when just your life is painful and exhausting. Part time work? change in meds?

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Swimming? Pilates, yoga (the sitting varieties)?

I walk every day but not on tarmac or paved paths. I walk the dog on a heathland type of space for about an hour during the week and more at weekends. I’m lucky that my feet don’t really hurt but my hips can do. Hiking poles have helped that. I’m not a gym person or a take a class person. I prefer to be solitary when I walk as well other than my dog. It clears my head, solves my works conundrums - I write legally binding decisions on consumer complaints about financial service providers to a target each quarter. Target doesn’t drop unless I’m off sick for 3 weeks. But some days I walk less and throw the ball for the dog more. For me it’s more about being outside frankly. I’ve no targets exercise wise other than to do whatever feels right that day. However little I do, moving about is simply essential. Every day and at my pace and no one elses.

I’m 4 years into this too @tamac. Cosentyx is really starting to work for me now - since I started it in November. My third biologic. Yesterday I managed to walk in my beloved woods again for the first time in a year (when Benepali - biosimilar to enbrel was then working). The woods for me are far more challenging, hills, undergrowth, brambles etc. etc. But I walked around 3 miles in 2 hours and was well chuffed with myself. No way could I repeat that today though.

Our difference is our jobs and possibly disease progression. I work at home mostly, definitely needing my brain working coherently but mostly at home. I don’t need to drive long distances and I’m not stressed like you are over a) work or b) giving it up which you’ve discussed previously. Although I remain at risk of redundancy, possibly later this year. That’s been going on for 3 years too which is fairly stupid of my employers but I’ve given up concerning myself about it for now. No point. It’s a good job, pays OK and I get to work at home. I simply live in the day, Some days now are great, others less so but I can see I’m progressing back to a level of capacity that’s far more coherent for me. But I don’t have high expectations anymore of capacity staying around for long or a med working for years. But a part of me is hoping I’ll be wrong with Cosentyx and it will indeed last. I’m on 300mg every month now.

I’d be concerned about your breathlessness and heart pounding. I’m asthmatic and Imraldi (biosimilar to humira) which I took for 8 weeks from last July, reignited my asthma which had been fine for the previous 15 years. That was awful. Interestingly an anti-histamine helped that.

I can’t remember what biologic you’re on now. I think it’s humira every week. Am I right? If so I’d find it odd it’s made you breathless given my experience on its biosimilar. However I’m guessing you’re thinking you’re breathless because you’ve no stamina and your feet and knees hurt too much. It so sounds like your inflammation isn’t yet controlled but more importantly your head is still demanding your conform to certain levels that perhaps aren’t realistic anymore.

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Humira every week. Doesn’t seem to do more than every two weeks. Not sure there is anything I can take off my plate. I drive to work, work, come home and crash. I have never been this close to filing for disability. Doc may go back to Cosentyx if things don’t get better. They need me at work (I think). I may negotiate working from home one day a week, I already have the accommodation. If I tell them I either work from home one or two days a week, or retire (disability), I can probably get it.

My knees and feet are very bad. I have had them x-rayed and have no arthritis, they just hurt.

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I don’t think the Humira is causing the breathlessness. I have just put on weight and am so out of shape. The steroids two years ago put 40 pounds on me and it hasn’t gone away. Doc asked me about going on steroids again and I said no. They put weight on me, drive my blood sugar crazy, and make my low back hurt terribly.

My work is computer work, but it has gotten stressful lately because of a change in administration. New people that do not know what they are doing running things. I am closer to throwing in the towel and taking disability than I have ever been, but they keep paying more money. Powers that be are wanting me to take a management job, but I am not sure can handle it.

The wife and I are afraid if I take disability, it will all get worse because I will have nothing to work for. I had to travel and drive two weeks ago and more last week. I told my boss my traveling days were over. For the upcoming year, I can get a lot travel removed, but they will work me harder in the office. For me to stay working, I am going to have to have a serious sit down with my bosses.

My boss is like my wife, doesn’t understand just how bad it is. The cold weather has really hit me hard this year. I guess I am going to need to evaluate it all.

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All I can think of is ‘small’ exercise daily - anything is better than nothing, regular seems good. An exercise bike maybe? Or those tedious exercises physiotherapists dole out, the ones I never used to do when things were bad but subsequently wished I had.

You are in a tough place. I’ve read all your posts over the years and the reality comes through.

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Go for 2 days a week. The worst they can do is say no, and it can make a really big difference to your symptom control.

For me going part-time and working from home arrested my downward spiral and ever so slowly put me in an upward spiral, so much so that now, even months without medications (other issues - hopefully back on them soon), I’m still coping ok with life. Every little bit helps, and you deserve to ask for help.

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Thoroughly agree with any ‘working at home’ days. Say you need two and go from there as @Jen75 suggested. Working harder at a computer but at home is way easier on PsA issues. Believe me I know. Even though Cosentyx is or at least appears to me to be helping so much now, it would take some building up for me to commute into London every day 5 days a week and then travel otherwise as well. Presently I’m lucky I don’t even have a requirement to be in there once a week just now, it’s down to once a month. Nothing whatsoever to do with my PsA issues either.

So I don’t have that expectation of a med allowing me to do that. I simply require it to allow my brain function at full power and not have me distracted by too much pain. And I require it to permit me to walk my dog every day properly, easily so that we both enjoy it. I require it allow me go to the supermarket and shop and run a house with washing etc etc and I require to permit me to go out and be social when I feel like it which with me can be somewhat rarely.

Although at the beginning of this month, I had to jump on a plane to Dublin at short notice for my elderly aunt’s funeral. I stayed over night too. It was full to the brim of being ‘social’ too. Irish funeral are quick affairs straight after death so getting to them is all in a rush. I managed that to include walking miles in airports and driving to airports etc. It was a burst of adrenalin and yes I felt shattered tired after and my feet hurt because I didn’t take my walking pole but I recovered. However if I were to do that every week, I wouldn’t cope at all. Not at all.

It’s 6.30am in the morning here. I’m up but still in Pj’s and will start to work in around an hour or so. I need to kick my partner out to work shortly. He works outside. Around mid-morning I’ll have a shower and get dressed and possibly have breakfast. The dog needs to go to the vet at lunchtime and we’ll go for a walk after. I’ll call in to the shop after because I need a couple of things and I’ll probably work till around 5pm. That’s a long enough day, it’s all at home. And I’ll have ‘small exercise’ as @Sybil mentioned. There might be stressy things to deal with workwise or there might not. But I’ll be working hard on intellectually challenging stuff whatever.

Go ask for working at home days. Your disease now requires it whatever level of no understanding afforded by either your employers or your wife. Something has to change for you soon, hasn’t it? Best of luck.

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Heck just getting out of Bed is exercise. We have a fair number of members who don’t do that much (seriously) except to take care of business. What has helped me more than anything is the app my cardiologst installed on my smart watch that beeps every hour that I don’t get up and move.

Don’t be discouraged tamac, you are doing the best you can…

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I really understand your pain in the knees and feet. I feel very much a hypocrite when I write about exercise. When I do it regularly, I do much better. It’s kind of like you don’t notice the good effects until you stop for whatever reason. Then I really begin to realize once again that it was (is) very beneficial. In my case, exercising in a swimming pool has been great. I usually start by just walking from one side to the other for about 10 minutes, and then do a series of exercises I learned when I first was sent to a physical therapist. I try to do this at least 3 times per week. I share your comment about cold weather. The older I get (now 72), the more I am impacted by the cold. I find myself skipping a session at the pool because it is “too cold” to get up and get outside to the car. Next thing I know I have missed several sessions and my pain resets itself to the more uncomfortable level it was prior to starting the pool exercise. I might also add that I believe, at least for me, the benefits of this pool exercise is cumulative. The more I do it, the better the results. I guess many of us are alike in that we have days when we feel so badly we just don’t want to do exercise of any kind. I’m certainly guilty of that. Every doctor that I have seen has urged exercise. My back surgeon even said to me that if I was driving or doing anything sitting, that I should stop the car every 60-90 minutes and walk around the car 2 or 3 times. He told me that even this small effort would yield positive results. Again, when I follow this advice I do feel better. Don’t ignore the shortness of breath. I had a single incidence of SOB a little over a year ago. Literally, a single event. But I have a history of heart disease in my family, have diabetes, and am far to heavy. The short story is I mentioned it to my primary care doc, underwent a test, found out I had two (2) blockages in the same heart artery (both were 98% blocked), had a procedure to remove the blockages, and had stents placed inside the blood vessel. Don’t know if I would have survived had the blockages not been discovered, but I’m still here. And again, the only sympton was a single SOB incident. Good luck to you. I strongly urge you to consider aquatic exercise programs. They really work for me, whenever I do them regularly.

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My neurologist asked me if I exercise, I said no. Why pretend. I said I still work, so I am active, but no, I do not exercise. I am in bed, I can do leg lifts… I also have severe small fiber neuropathy, so when my feet are burning, I am not going to walk…

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Truly feel for your pligjt. It is a horrible vicious Circle with cortisone s grim side effects
What truly seemed to help was anti inflammatory diet, low ti no carb, high fat , protein, animali base and not plant based, allowing after a while to start intermittent fasting, gradually fasting for 2 or 3 data at a time , this will get rid of excess fat and reduce pain and inflammation. The tiredness will also improve
Having said this of course part time computer sounds like a Real dream, Aldo feel misure As to how long will be’ able to hold off disability , and other issues seem to crop up, yesterday went from work towards home but caved in after 20 minute and a long Phil stretch, felt heart or something not being 100%, dizzy, out of beat, feel like that at times, usually when walk in heavy traffic, as if exhaust Fumes make me cave in. Certainly feel more scrive through since have stopped grains veg and sugar all the best

I think it is important to cling to hope that there will be a better day. I’m pretty close to your age and but less experienced with PsA. But I am learning that hope is a marvellous thing, not “visions of grandeur” but a realistic hope of incremental improvement. When I have a flare up, and wondering how I can go another day, ANY improvement or relief helps trigger that essential hope. Sounds like you are in that “trough” of discouragement right now and I guess when we are in that place, we have no choice but to maintain as much as we can, shuffle one foot forward and give thanks that we can shuffle once more. Is it possible to take a “stress leave” for a shorter season as a time for you to improve and test the waters before a permanent move to retirement? If at all possible, don’t let money/earning keep you from looking after yourself. Pushing yourself to work may come at a long term physical expense. Fortunately, I am able to work 80% at home at my own pace…I feel for those who must show up at work 9-5, M-F…I’d fall asleep at the desk etc…PsA is does not kindly hand out energy but is generous with fatigue!
This forum is fantastic but it is a bit sad that empathy is hard to find closer to home/in person. Praying for you and wisdom concerning tough work decisions.

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I am just down. I have been on a physical slide down for a few months. Had to walk too far last week for something at work, now I have a trashed knee and have already missed two days of work. I’ll probably have to have steroids shot in it.

I am on my third biologic and none have seemed to do much. I think my next step is wot try and work out a deal at work where I can work from home 1 or 2 days a week. If that doesn’t happen, I think I will retire and file for disability.

Thanks for encouragement.

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Look for an indoor pool. Some offer arthritis classes. My husband got my a personal trainer 3 years ago. I was so mad. But my trainer understood psa and fibro and he adapted the exercises so as not to hurt my joints. Even during bad flares he finds stuff for me to do. I have lost 38 pounds! Don’t give up. But don’t expect to do your old normal stuff.

It’s a start. Some days a major victory…

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@tamac, I loved my work and I hated the idea of giving it up. But taking disability was the best thing ever for my PsA. I can kick back on days when the fatigue is too bad. On the days when my joints and tendons feel better, I can do yoga, bellydance videos, or get in the pool and walk in chest-deep water. I was able to go to a physiotherapist twice weekly for a couple of months and get exercises for my toes and ankles, using elastic bands, which eventually enabled me to get up on my toes again for the first time in many years. I’ve also lost 30 lbs over the past three years because I’m not stressed out all the time.